to expect our SCBU baby to not be neglected?

[MicrochipsAndMemories]

Bear with me, I am very tired and haven't had much sleep since our son was born at 1:40am Tuesday morning.

The back story - IVF baby. Measuring small at 36 weeks (actually measuring as 34). Monitored for a week. My wife had all the signs of pre-eclampsia so they stared induction at exactly 37 weeks. Induction worked but after 16.5 hours of contractions they rushed my wife in for a emergency c-section as baby was distressed.

Baby was born weighing just short of 5lb. Took a while to breath but other than that doing ok. They took him straight to SCBU because of his weight and his blood glucose kept dropping.
My wife was recovering on a different ward from her c-section but managing to spend quite a bit of time with him. She was discharged on day 2 and since then we have spent all day sat with him.

He was moved out of a incubator into a cot this morning because he's fine other than needing to be able to drink from a bottle or breast. He has a feeding tube which they said was for if he wont feed.

When he is crying they just give him a dummy while my wife is using a machine to express milk sat next to him because the staff don't want us to disturb him between his scheduled tube feeds? Not sure how he's supposed to learn to take a bottle/breast if they don't let him try. He hasn't managed to suckle properly on the breast but they really haven't allowed him to try more than I think 3 times since he was born. My wife is using the pump to get milk for him to have from a bottle but they don't want to give him it in a bottle because it will wake him up so they give him it down his nasal tube instead. They say he can go home once his blood glucose has settled and he's feeding from either bottle or breast properly, how's that going to happen if they wont let him try? It's frustrating and it is starting to upset my wife.

My wife had a 15 min cuddle earlier and that's all she got today. I would say she has had a cuddle with him for no more than 3 hours since he was born. This just seems wrong. How are they to bond and how is he to learn how to breast feed if they wont let him try?

They also wanted to leave him 9 hours without checking his nappy which seems like an awfully long time for a new born baby, or any baby really.
We changed it at 2pm and then they wouldn't let us change it again because, again, it would wake him. It got to 8pm and we asked if we could change it before we left and they said no, "a nappy can last all night if you want it to" and they said they'll change it at 11. 9 hours after his last change??? So I just changed it anyway and it's a good job I did because it was soaked and soiled. They then wanted us to lay him straight in the cot to settle himself but I passed him to my wife to have a good cuddle before we had to go home.

Tomorrow should we just do the things we want to do or should we trust that they know best? My wifes instincts seem to be right? He did need his nappy changed. He does want to suckle, they just wont let him :(

Any advice would be great.

Thank you. Sorry if it doesn't make sense, we're both really tired :lol:

Tell the staff you are doing kangaroo care.

Also ask them to reason why breast/bottle feeding is not adviced, if they say because the baby will wake up ask them why the need for sleep is.

I have no experience is scbu but that doesn't sound great.

You say he is in a normal cot? Is he on a heat Mat or under a heat lamp or being treated for jaundice? That may mean you can't cuddle them ad much.

But I thought cuddles and skin to skin were promoted in scbu as far as possible.

're the feeding are they saying he is too tired yo feed/latch? It can be hard work for some babies but you are right he nerds to be allowed to try!

Tbh he isn't that small either, many babies go home weighing less and if he is breathing fine and regulating his body temp etc then I would gave thought getting him feeding would be next on the to do list.

Does the hospital have a bfeeding counsellor you can ask for help?

bumping for you. Hope a nurse or parent with some experience will come along. Or perhaps there is a prem section to post in.

However, on the face of it, it sounds like your baby isn't being looked after very well.

I would give him lots of cuddles and change his nappy regularly.

prem boards

www.mumsnet.com/Talk/premature_birth

Congratulations on your new baby

I think you need to ask SCBU a few more questions. It may be that his blood sugars are still really unstable and they think that by not disturbing him with trying to breastfeed and for too many nappy changes, then he won't use up too much energy and his sugars will be more stable. I would ask them about this.

Even if he is not ready to breastfeed because of the energy/ effort needed, he should be able to have lots of skin to skin contact with your wife as this is part of helping her to establish feeding. Ask SCBU why this isn't able to happen now and also ask if there is an infant feeding advisor/ breastfeeding support who can come and give you both advice.

About the nappies, I think 9 hours is way too long and think he would be changed nearer to 4-6 hours really.

Ask to speak to your consultant/one of the team on SCBU about his plan of care.

With more info you can then decide if their care sounds more appropriate

How about asking someone looking after your baby to explain things? It doesn't have to be a black and white "just doing what we want to do" vs "trusting they know best". The sister / charge nurse for the shift or the lead nurse for the unit might (should) be more helpful than those you've encountered already. If not, you could ask the hospital PALS (patient advice & liaison service) to advocate for you. They're usually very helpful.

It's a difficult time that you're experiencing so it's not surprising things feel stressful. It seems bizarre to me to leave a newborn unchanged for that length of time, but FWIW I've had a little one who was term, but teeny tiny and he was too weak to suck for a while. The action of actually sucking to get anything out used up as much / more energy as he was able to take in. So he was syringe fed for a couple of weeks. Of course, all babies are different, but he was exclusively breast fed for a year and the early feeding challenges didn't affect bonding at all.

Thank you for the replies.

He's not under a heat lamp or on a mat. He's in a normal cot, he's just on a breathing sensor which is standard for any baby.
He's not tired, he lays in his cot awake some times wiggling his legs and arms about, he's a normal baby, just a little bit small.
He sucks his hands and cries and the few times he has been held he's tried sucking on my wifes neck or top of chest area so I think he wants to feed.

Congratulations on the birth of your little one, sorry you are having a tough start. Babies in SCBU are often "minimal handling" to allow as much rest as possible. I would ask to speak to manager / sister tomorrow to express your concerns / what you would like. It may be there is a reason for resting him as much as possible. PALS service within hospital are worth approaching, they will have an office in hospital and a phone number, they can be a great liaison / support to you.
Advice about requesting kangaroo care and involving breast support councillor are brilliant.
Good luck and I hope you are all home soon.

Hi there,

Firstly, congratulations on your new baby We had babies born ten weeks early who spent 3 months in NICU/SCBU last year and we felt the same about ours when they were first in there.

We had the chance to ask loads of questions about why they were or weren't doing things with our babies or letting us do things too so I'll try to remember what was occurring with ours at a similar gestational age to yours.

On the disturbing them (for nappies or tube feeds) or for getting them out of an incubator - we used to get really frustrated having to ask permission to hold our babies ans that they weren't changed regularly or that they were given dummies and not cuddled. When we asked our nurses about this they said that the babies were having to work really hard to exist outside of the womb because of being born early. Because the main thing they need to do is grow and regulate their temperature, and concentrate on breathing (at your babies age the bit of the brain that does that automatically isn't fully developed yet) it's important for them to conserve energy and moving/being moved or being cuddled costs them energy. Obviously being cuddled is really good for them and helps with bonding, but not if it makes them so tired that they have other issues. Normally the first indication of them being tired is a change in their breathing.

With breastfeeding, again this is really great, but costs energy (and more energy the smaller a baby is) so yes they can try but not for too long as they'll lose more energy in trying than they gain from the milk IYSWIM.

I'll stop for now but please do pm me if you need or reply on here and I'll try to share more if it's helpful.

Take care of yourselves,

O xx

Write down all the question you want much easier than going in then getting a mental block.

I'm sorry you are going though such a worrying time :( congratulations on the birth of your son!

I've had 2 prems myself and the difference between the care they received was astonishing. My daughter was a 32 weeker and the hospital were very much of the opinion that my input wasn't required and they decided to bottle feed her despite me expressly telling them they weren't to give her anything unless we had tried to breast feed first.. They just ignored me, I was rarely allowed to hold her. Tbh my opinion of the nurses isn't good, 9 years on and I still feel resentment towards them.

My son was born much earlier and was much poorlier but at a different hospital. We managed to expressly breast feed until he was 19 months and I never ever felt excluded from his care. I could hold him when I wanted for as long as I wanted to.

If your wife wants to breast feed your son needs to be suckling at the breast, you are absolutely right. Unfortunately ime some nicu nurses forget who the boss is when they are dealing with other peoples babies and it seems to be a bit of a power trip.

Don't let them give him bottles. Ask for your wife to be able to stay in a side room and to be called when he needs to feed and then if he gets to tired for the rest to be out down the tube. If your wife wants to breast feed a bottle won't help.

You are absolutely right about the nappies :) I think the nicus I have experience of changed every 4 hours. Tbh a routine nappy chance is important as it means the nurses are hands on frequently and they need to look to notice things like swelling.

My daughter spent 5 days in NICU and 3 in SCBU.
She was born with Congenital hypothyroidism and a large neck goitre. She had difficulty regulating her temp, had an infection, low glucose, low sugar and a small heart problem.
She needed extra oxygen and heat. She was 7lbs 4, so not a small baby so I can't really help in regards to small baby stuff...
We were positively encouraged to hold, change and BF her. Shown tricks to wake her up and encourage the BF (it was a 4 hourly schedule and I would express 1 bottle to do the 2 am feed so I could sleep, I was also post EMCS)
We were shown how to safely change her, with all the wires and cannulas, how to dress her, how to get her out safely for cuddles and BF. We obviously didn't have her out of her incubator for hours on end as she needed to be in there but we would just check we were ok to take her out and get the OK from the nurse.
We had even more "freedom" in SCBU. We also took her temp and wrote it on the chart (by this point there were no meds, just in for obs)
My only bug bear was that they wanted to keep her in for obs for longer than I thought necessary. I wasn't discharged ( mid wife said I could stay) so I was still on the ward and told them that all obs could be done on ward by the midwives as it was heart rate/temp and weight at this point. I think that was because she was a bit of a rare case so they wanted to be extra careful.
I would get a hold of whoever is your sons consultant and see if they can help.
I second speaking to a bf counsellor, they might have some good advice
Stress that your wife wants to try breast/bottle, nag and nag and nag them.
As for nappies and cuddles, just do it.

As an ex NICU nurse, this doesn't sound ideal to be honest. Ask to speak to the infant feeding specialist, might be a midwife or one of the nurses on scbu - it might be they can come and observe a feed and give a plan of action to the nurses that better fits with you and your wife's (and quite frankly, your baby's) wishes

If there are good reasons for the lack of feeds/nappy changes etc (and on the face if it, none seem obvious), they've really not communicated any of this well to you.

Yes to kangaroo care. They should know this is life saving stuff for babies and parents and facilitate this at every available opportunity. Maybe ask for a meeting with ward sister/manager? This might be your best course of action to get definitive answers and make an agreeable plan to move forward with.

Congratulations. Your instincts sound spot on, you can't hold a baby too much. Good luck. Hope your little one thrives and you get home soon.

Come over to Prem boards Microchips - we've all pretty much been on SCUBU. It does sound odd to me if I'm honest.

Your baby sounds lovely.

I am a mum of a preemie, she's 9now so things might have moved on a bit but she was born at 32 weeks. She had to be drip and then tube fed because they don't have a suck reflex that early, so a few weeks in we were where you are now.

The problem is they are so tiny and they get so tired easily. Even if you don't see him as tired, he can wear himself out quickly trying to suckle, then sleep and not get enough nutrition and begin to lose weight which is a bad thing when you are so tiny.

It's very early days yet but they will be trying to get him regulated and gaining weight, and then encourage him to spend longer and longer ont eh breast until they are happy he can suckle long enough to keep gaining weight.

I wouldn't be too happy about the nappy situation though tbh as their skin is so delicate and can break down quickly and that seems a long time with no change.

I know it's all very worrying, but do try to enjoy him, before you know it he will be 9 as well and you will be sat there wondering how that happened and where your tiny baby went to!

Hi I've spent plenty of time in nicu my ds1 was born at. 26 weeks, my ds2 at 24.
Tbh none of this sounds great, you are right re 'contact' I was encouraged to do kangeroo care as much as possible and as much care as possible too. It seems very odd they are not encouraging this especially as your baby is in a cot, therefore breathing well and a good weight, neither of mine were as heavy when I got them home.
By the time they were in a cot they were hardly ever put down. Does your baby need treatment for jaundice/have body temp issues?
The usual reason in my experience they don't offer the breast or change too regularly is if (as as initially in my sons case) baby is judged too weak to have another thing to expend energy on, hence the tube. And pumping takes the place of the stimulation of having baby at the breast to encourage supply.
There maybe a medical reason for their actions but I would be demanding explanations and answers from the drs as it is not clear to you. I would ask to see the consultant as soon as possible.
In my experience the care is amazing but you do need to push sometimes. Which I know is difficult, I make it sound easy but I know it's not, it's a terrifying time.
Sorry am probably not of much help but if you have any questions I may be able to help with, please feel free to ask.

Different nurses have very different opinions

When ds was in I went from 7am til they told me to go home - I had a similar problem in that they wanted him in the cot between 'cares' (tube feed and bum change every 3 hours on the dot)

The reason was that ds couldn't regulate his own temp and was on a heat mat. I wish I'd pressed for more cuddle time as I was literally aching to hold him

Wrt the feeding - a couple of nurses were really
positive and got me to try to feed and said that as I was there all day Iit made sense to feed on demand like a normal baby

A different nurse insisted on tube feeding him as a top up after I fed him. I let her once and went for a cry. 2nd time I told her 'no'. The sister came and had a quiet but stern word and said it was what my baby needed. One of the bf supportive nurses came over and told me to stand my ground.

Suss out the nurses and make friends with the supportive ones.

Sorry I seem to have cross posted with a zillion other people.

Don't be afraid to ask all your questions to anyone and everyone who enters the room and absolutely follow your instincts. I found in scbu that breastfeeding really wasn't a priority for them as baby has to work to do it and they really just want to get calories in. My baby was sent home with nasogastric tube still in but i was determined to feed him myself so did it anyway. His first feed was at one month old and with a brain injury so persevere if it is important to you, it will happen. I see no good reason why you should be discouraged from cuddling, letting baby try to suckle or changing nappies when necessary so unless they clearly state decent reasons i think i would be doing it anyway. Good luck and hope you are out of there and enjoying normality soon.

We had a similar experience six months ago. I had a full-term (late) baby who had some early breathing difficulties and was taken to NICU. He was on oxygen for the first few days, and was fed via a feeding tube. However, he was then bottle-fed until we were released, when it was up to me to establish breastfeeding. It was hard work.

We were allowed to have him out of the cot whenever we wanted though, and were encouraged to change him etc. (except at night, when I was sent to bed 'for my own good'). It seems a little curious that you aren't being encouraged to do the same.

Do ask to see a nursery nurse or breastfeeding consultant to help get breastfeeding established. If that doesn't seem to be happening, you can also contact your local la leche league, who may be able to send someone in to hospital to help support you. Please also feel free to message me if I can help at all. It sounds like you'll be home soon (good!); do get in touch with local breastfeeding cafes etc at that point if you need a bit more support.

My baby was term and was in SCBU fur 2 weeks due to being born with suspected meningitis ( never confirmed)

I was desperate to BF but the midwives gave her bottles and called me up to try BF a few times a day.

One night I cried while trying to feed her and a lovely intensive care nurse wrote quite a strong note in my baby's notes about how I should be supported to BF and that bottle feeding was not medically indicated. She had bf her babies and was lovely helping me.

It's hard to know if the way your baby is being cared fir is medically indicated. Obviously it's much easier for the clinicians to measure how much your baby is taking if administered artificially. But you are the parents. So I suppose you need to talk to them about all this and impress on them that breast feeding is important to you both.

When my DS was in SCBU for 4 weeks as a premmie he had "cares" every 4 hours: nappy change and a quick clean of his gums with a cotton bud dipped in sterile water.

They were concerned that he was little and wanted him to conserve his energy so we allowed him to be given a dummy. He was also rooting / suckling reflect kicking in so it helped with that inbetween tube feeds. He was tube feeding until 2 days before he was allowed home.

We were only able to hold him once a day until about a week before he was allowed home.

Sounds like they could be following their proceedures without assessing the individual patient iyswim? Is his blood glucose stable now? What is their plan to get him ready to go home? Establishing feeding bottle or breast is usually the last thing to happen but a plan should be in place so you know when they hope to get to this.

Ask to have a chat with your DS's consultant or try and catch him on the rounds in the morning.

I hope you can get some reassurances from the team.

Congratulations on your DS

When DD was in NICU (32 weeks, 4lb4) we were able to hold her about 3-4 hours a day under a top, she slept through all of this bar a couple of minutes. I tried latching her on at 3 days old and continued to do this for the next 3 weeks until she sucessfully fed. She was in SCBU after a week, and then I was allowed to do all nappy changes and tube feeds after putting her to the breast before each tube feed to allow her to latch on and see if she would suck. I would then tick it off on the chart and when I wasn't there the nurses would do this. I held her for hours at a time - there was no limit on this as soon as she was out of NICU, even when on a heated blanket they said my body heat was just as good with a blanket over her and skin to skin, and said that my heart beat and breathing would help regulate hers (I think this is called kangaroo care?)
Try quoting some of this to the nurses and explaining this is the sort of route you would like to go down. Don't forget this is your baby, and complain if you are at all worried. It sounds like they may be understaffed so you need to bring this to attention, especially if they are skipping nappy changes and not letting your wife establish breastfeeding in the way she would like.

My babies were born at 32 and 34 weeks, both 5ish lbs
The SCBU staff encouraged me to allow them to suckle from the day after they were born. The would give the tube feed at the same time. At first they could barely suck but within a day they were having a good try. Yes, they fell asleep within a minute but they were learning.
I had them both fully breast fed in 10 days.
There were a couple of times when we didn't wake them and just tube fed instead. The nurses did the night feeds, but I did all the daytime ones.
Talk to the staff. My boys are teens now so things may have changed.

Thanks again for the comments and congratulations.

My wife isn't precious about breast feeding, she would like him to have breast milk even if from a bottle rather than through his tube.

The other babies who cry more get held all the time, even the ones that are needing more help than him. I think because he doesn't cry much they just leave him because he's easy.

We're going to get there early tomorrow and speak to the doctor when she does her rounds and get some answers and request kangaroo care. they do have posters about kangaroo care up everywhere so I don't know why they don't offer it more.

Were also going to just change his nappy and ask why he's being left so long.

We have asked a few things but kind of get fobbed off and sometimes feel like we should just trust them because they are the professionals. I will update tomorrow.